在癌症患者的健康数据共享偏好中识别的启发式:定性焦点小组研究
Anna Hermansen1,2, Samantha Pollard1, Kimberlyn McGrail2
1BC Cancer Research Institute, Vancouver, BC, Canada.
Journal of medical Internet research
|December 17, 2024
概括
癌症患者经常使用心理快捷方式,或启发式,当决定分享健康数据进行研究. 了解这些非理性流程是改善数据共享知情同意的关键.
科学领域:
- 医疗信息学 医疗信息学
- 决策科学 决策科学 决策科学
- 定性研究是指质量研究.
背景情况:
- 精确瘤学依赖于现实世界和临床试验数据,需要患者同意共享数据.
- 患者数据共享决策通常以实用理论为模型,但直观的启发式过程也发挥着作用.
- 关于健康数据共享的启发式机制的研究有限,特别是在癌症患者中.
研究的目的:
- 探索癌症患者如何利用启发式决策来决定是否共享他们的健康数据用于研究.
主要方法:
- 进行了3个焦点小组,其中有19名经历过癌症的加拿大参与者.
- 根据文献审查,开发了一份半结构化的主题指南,该指南涉及数据共享问题,激励措施和同意.
- 使用启发式框架和主题分析分析焦点组转录,以识别和分类启发式实例.
主要成果:
- 确定了12种不同的启发式影响参与者分享健康数据的意图.
- 发现社会规范和社区建设启发式表现为利他主义.
- 观察到认可,声誉和权威启发式影响了机构信任,而安全需求则促使控制和透明度启发式产生错觉.
结论:
- 健康数据共享决策受到启发式处理的影响,这可能会影响同意的"真正知情"性质.
- 启发式过程会影响患者的风险效益评估,导致可能与理性决策不一致的结果.
- 将启发式处理的理解纳入同意机制可以促进更现实的和有意义的患者互动,以共享数据.
关键词:
加拿大加拿大加拿大加拿大加拿大加拿大利他主义 利他主义癌症患者 癌症患者临床数据 临床数据控制 控制 控制 控制分享数据的数据共享.在决策过程中做出决定.探索性研究是探索性研究.聚焦小组是一个重点小组.分享健康数据共享医疗保健 医疗保健 医疗保健 医疗保健启发式听觉学是一种启发式听觉学.信息技术 信息技术 信息技术 信息技术获得知情同意的情况.医疗信息学是一门医学信息学专业.患者教育 患者教育精准医学是一门精准医学.质量上的影响是有质量的.现实世界的数据.专题分析 专题分析在信任信任信任信任信任信任.更多相关视频
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